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Rompers wrote:Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?

And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".

Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!

Rhonda

look, this is a very short notice thing. I did not invite a tenth of those who might be interested.

For the next ten days, i am looking for more doctors who are intersted or thinking about this subject. please do use your advocacy to share the word. I actually injoy your empowerment

Hi Dr. S,

I've shared the information regarding your symposium with two vascular surgeons I've been corresponding with (one at Rhode Island Hospital and the other at the University of Iowa), and the nurse of a very prominent vascular surgeon (if you'd like names, I'll send them offline) but I wasn't sure if it was ok to do so after I read this on Facebook....

This event is not open to the public. The auditorium has limited seating and IR's in the NY tri-state area and select neurologists were invited by email directly by Dr. Sclafani, and there is room for more to attend. The subject matter is targeted to IR's and MS neurologists. Attendees must rsvp and be registered. The media is invited. Wheelchair Kamikaze will video tape the symposium for the CCSVI Alliance website. If there is room, patients will be invited.

She seemed to have "inside" information. So, I'm happy to know that it's alright to "share the word".

Thank you for everything you do, Dr. S. That can not be said often enough.

GiCi wrote:You may like to know that the vascular surgeons in Belfast are organizing a debate on CCSVI and Dr Sclafani has accepted to come and take part in it: He will be confronted by sceptical neurologists.

Phase 1 of the study requires $500,000 – private philanthropy is required to provide the back bone of the necessary funding. We could wait for governments to respond, we could wait for others to provide the funding, we could wait for other countries to proceed – or we can donate today and start trials in the United States immediately.

The MRI Institute for Biomedical Research is at the forefront of this new research and has a team ready and waiting to start work in collaboration with imaging sites in the US. However, they do not have the funding. We need to get the research started NOW which is why we are asking you to attend this information seminar where you will meet and talk with doctors and scientists who will focus on this new approach and who will be carrying out the research.

Space is limited and advanced registration is required. Ticket price is $100 per person or can also make a donation in any amount, of which 100% will go directly to this research project and will be treated as a charitable donation for tax purposes.

This is a grass roots attempt to fund the crucial early stages of study.

Please pass this along to anyone within your network who is interested and can help. If you cannot attend please consider making a donation at http://mrimaging.com/donate.html

Sincerely, Rachel D. Martis-Laze

How again did we attract such a champion to the cause?

(And my suggestion for renaming of the cutting balloon catheter would be the liberating balloon....)

Last edited by Cece on Sun Jul 11, 2010 9:36 pm, edited 1 time in total.

"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

My question relates to testing/scanning/diagnosing of CCSVI. I have seen the "best way" vary from MRV to transcranial color ultrasound to catheter Venogram to IVUS...

I have been told, and I have read, that the catheter venogram/venography is the "gold standard" of IRs and that is the best way, but now I have heard that the intravenous via catheter ultrasound is the best way and a catheter venogram can give a false negative...???

Is there a "best practices" yet? Do you have a recommendation as to what we should be looking for in terms of testing for diagnosis?

Thanks for the images; I was wondering what they looked like.
The doctors that I have talked to about CCSVI have been rather amazed at the level of patient knowledge and willness to understand fully what's involved.

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Someone mentioned it would be a good idea if a less scary name for the cutting balloon could be found, and I have a suggestion:

The shaping balloon catheter.

~HP

Angioplasty companies could use good marketers. You thiink Cutting Ballon is bad. When antioplasty was just getting started, C.R. Bard (then U.S.C.I.) had a balloon for the coronary arteries that some brilliant person in marketing named "The Headhunter".

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh

Just to interject, my IVUS in April printed out on your average small sonogram paper maybe 3x3 inches. He explained what I was looking at as I was laying there because I asked to see it, it's kinda like looking at a very early on sonogram of your child, not much to see there, for the untrained eye of course. What I wouldn't give to have a copy of that! All I did was nod my head and agree. "well of course" lol. Musta been the morphine talking... It did show (after it was pointed out to me with a ballpoint pen) the septum inside my vein before and after. Guess it wouldn't be too much of a stretch to think it can see other stuff too. Plus the annular vein was clearly visible. Trippiest thing I'd ever seen.

Sorry for butting in, I'm sure the good Dr. will have plenty to say...

Up to where is it safe/necessary to balloon (or stent) veins? I have seen a probe catheter up to the transverse sinus; but is it usual?

Thanks

algis
stenting has been done up into the transverse sinus. but it is not usual. The higher lesions can be physiological and the nerves are quite compacted into that area. Stenting may injure veins at that level. I would not do it without a second opinion of a interventional neuroradiologist.

adamt wrote:i said i had a veno last month, but he said i must have a venogram a day before the angioHe said "i have to exactly plan my catheter movement"

i have sent him my images/video, so i cant see the importance of another venography.

You MUST have one done right before the procedure. Stuff moves. Why do you think the doctor said what he said about planning ? You don't want to use an old outdated map to get directions to drive across the country !

larmo
none of this makes much sense. generally an IR does a venogram and then the intervention in one procedure. It is exceeding uncommon, and likely unnecessary to perform a veongram and then another one the next day. Indeed more than one iodine based contrast study within24 hours increases the risk of renal insufficiency

There are so many variations on what dr zamboni described and recommended. people are changing his perspective, practices etc without the evidence.

It seems very ironic that my first plan was to follow dr zamboni's protocol and make modifications afterward. Seems like few chose that path.

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